Infection?

Trish made it home and took a nap before the kids made it home from school.

I just got off the phone with Dr. Robert who gave an update. From his history with Rudy, he feels signs are pointing more toward an infection around the tracheostomy. Since Trish left, Rudy’s breathing became more of a struggle so he was put back on the vent. This brought his color and sats right back. Rudy has shown signs like this before as infections have come on. The irritation and occasional bleeding from inside the trach, a condition they call trachietis, are contributing pieces of evidence. They asked me to give consent to start a picc line, but they aren’t sure yet if that’s a step they’ll take. They have to decide if the IV they have started will work for the blood draws and antibiotic regimens they will likely have to start.

You can bet it’s an emotional setback to already be returned to decisions regarding vents and piccs, but the team does feel that cardiac issues are not contributing factors. That’s good news, but the reality is that we’re looking at 7 to 10 days for the antibiotic course. So, Trish is gearing up to head back down this evening.

More when we have it. Thanks for keeping in touch and praying.

Back for awhile

Sorry if these posts are a bit sporadic along with the information therein, but I’m trying to make sense of it all myself here in SB as Trish phones me with updates. Morning rounds brought a familiar cast of characters around–Drs. Robert, Gary, Ryan, Mary. We value their input. Right now Rudy doesn’t appear to be in any kind of distress, but there are enough things unclear about his condition that it looks like we should prepare to be there a few days.

I’ll let Trish fill in the gaps when she gets to the computer and can post. Of greatest concern is the fact that Rudy’s o2 sats continue to be low. What blood they could draw showed some issues with white cell counts that could indicate infection. He has been generally afebrile (no fevers to speak of). He did cough up a bit more blood this morning. The team is still having a very hard time drawing any blood from him. In case what they’re seeing is just the initial stages of an infection, they’ve started him on a three-day course of antibiotics. If one of the cultures comes back with something specific, they will initiate a more focused and extended antibiotic regimen.

One issue that has to remain in the picture is that Rudy’s heart may be giving indication that the time for the Glenn (2nd operation) is approaching. I must confess I havn’t gotten around to educating myself as much about that, but one indicator would be the dropping sats.

As I write, Trish is on her way back to SB to gather some stuff to stay at the hospital. The ride never gets dull. I like dull.

Admit One

It’s 1:30AM and Trish just called. It now looks like Rudy will be admitted back into the hospital. His saturations seem to have picked up back into his usual range (60-80%), but one bit of info that wasn’t clear to us before was that the scope of Rudy’s airway gave evidence of what might be a trach infection. In group consults, information bounces around a bit and all the data doesn’t get to you at once. The ER folks don’t feel it’s wise to send Rudy home with so many unknowns.

The irony of all of this is that UCLA has a shortage of floor beds so the only place they can admit him to is the ICU. Guess his former room is empty. Not sure how I feel about having our “usual room” in a place like this, but glad that Trish and Rudy are headed to familiar surroundings with familiar personnel. We’ll see if the morning brings further clarity, but for now the course looks like it’s going to be 2-3 days in the hospital for a good antibiotics course and/or a closer assessment of his condition. Trish and I will also scramble some logistics as she packed for the daytrip and is without the gear for a longer hospital sojurn.

Sooo, which lucky fellow gets to start the picc line this time?

Holding on for the loops on the Rudycoaster

Just got a concerned e-mail in response to my last post from a friend who expressed simpathy for this latest “twist on the Rudycoaster”. Thanks, Kim–that term sticks. Being Rudy’s dad is a thrill and we’ve learned to be joyful over the commonplace things–probably because they happen amidst a backdrop of twists, loops and turns that suck the breath out of your lungs.

Two hours later and I’ve been sitting here in SB trying not to dial the phone but wait until Trish calls. Trying to occupy myself with books, TV, web–none of which are doing the trick, but I sure am glad there’s ice cream in the house as that does seem to be filling some need right now.

Trish called just before 11pm and reported that the hospital team has been confounded in trying to draw enough blood for the labs they need–folks from the PICU have even come down to try and find a vein. In the midst of this, Rudy is on oxygen, but his sats are still too low. No one is particularly concerned about the blood from the trach anymore–the chest Xray is clear and the airway is not obstructed or damaged. They got enough blood for one test at the lab and perhaps that result will give them enough of an idea about whether they need to work on getting more.

Our friend Kathy has gone to UCLA to sit with Trish. Probably a couple more hours until we hear anything so I’ll doze with the phone nearby.

Not so fast…

Rudy was scheduled to have a follow-up visit at UCLA today, so Trish loaded him and his gear up into the car and made the drive from SB. Everything checked out fine with the NICU clinic appointment and with the ENT doc who need to check the tracheostomy, leaving Trish plenty of time for a visit with our ICU friends. After a bite to eat she was loading Rudy into the car when she noticed him bleeding from his trach.

Thankfully she noticed it then and not some point later on the freeway–it was unsettling enough as it is. She hustled Rudy over to the ER and they’ve been there for the last five hours. She’s keeping me informed as she’s able–the bleeding stopped on its own shortly after they got there, but the ER team checked Rudy over and got concerned about his O2 sats. The cardiology team has been brought in and they’ve been checking him over and are contemplating whether he should be admitted. Right now, we’re waiting for an echo and an initial set of lab results. Certainly a surprise–we are wondering if Rudy sensed where he was, felt he wasn’t getting his requisite share attention, and decided to pull a trick. In any case, if it had to happen, we’re glad it happened here where doctors who know him well were close at hand and quickly consulted. It’s coming up on 9pm and we’re here in SB awaiting word from Trish on what the plan will be.

Once again a reminder of what life is like on “Planet Rudy”. Updates when we have them. Please pray with us.

Rudy’s All-Star Team!!!

As much fun as it is to have Rudy home, there is one thing about the ICU we miss: the incredible people who work there. A diagnosis of HLHS will never be anything but a nightmare, but given this is our circumstance we are so grateful to find ourselves in the care of such a company of people. Rudy was in the hospital for six months and he’ll be back for more, but Trish and I will never fail to be moved by the fact that there are people of skill and expertise who do what we can’t–from complex surgeries, to watching for things we would never even know to look for, to sitting with him all night while we get some sleep.

Because we don’t want to forget any of them, and we want Rudy to someday see how his life was only possible because of scores of people who came around him, I’ve compiled a slideshow tribute (OK, I started to, but needed Greg Lawler’s genius to actually complete it). If the names and faces aren’t recognizeable to you, be moved by the sheer number of them. It’s very humbling to us how many people did what they did so that Rudy could have a chance, and we also regret that we didn’t get pictures of everyone. It figures that we somehow missed some of the regulars, so our apologies. As the file was too big to host on our blog, you’ll have to go back to Greg’s site and find the tribute video below Greg’s discharge show.

Click here and enjoy!

Rudy’s First Fine-dining Experience…

in-n-out

…or, as Rolf likes to call it, our kitchen! We all loaded into our car for the first time as a family of 6 and made our way to our Sunday tradition…In ‘n Out!!! Since it is our family’s favorite, we figured it was about time Rudy experienced it. It was, however, a bit overwhelming for him…he was pretty grumpy all throughout dinner and the minute we walked outside, he relaxed in my arms. I guess a place like that does take some getting used to. He wore himself out and fell asleep shortly after we got home. Everyone else is tucked comfortably in bed after a full day of swimming fun…YES, it was hot enough to swim so today marked the official opening of our pool this season. It’s supposed to be 80 degrees tomorrow and the kids have already asked if they can go swimming again after school…I smell summer comin’. Rudy experienced a number of new sights and sounds today…I wonder what his little mind is thinking?

april-19-002

Icing on the Cake

april-16-002 The past week and a half has been filled with a number of doctor visits and with each new consultation, I hand over Rudy’s discharge summary and we skim the details of his 6 month stay in the ICU. That coupled with the time I’ve spent going through 100s of pictures for the slideshow I’ve been working on are staggering reminders of all that Rudy has been through. I remember praying over and over on those darkest days “Please let us get him home…just for one day”. I don’t mean to sound overly dramatic but I didn’t want Rudy to die without feeling the sun on his face, without hearing the crash of waves at our nearby beach, without experiencing the sights, sounds and smells of home surrounded by his 3 older siblings. I wanted all of this for Rudy but, to be totally honest, I wanted it for our family as well…I wanted our family to experience life together with Rudy. There were times in our journey since Rudy’s diagnosis that I hoped for just one day with him outside the confines of the hospital walls and that anything beyond that would be “icing on the cake”. Well, here we are 10 days post-discharge and knee-deep in icing, so to speak. 🙂

Life in the CTICU/PICU taught me to literally take life one day at a time and to NOT take for granted any time we had with Rudy. The hundreds of hours spent in the hospital allowed me and Rolf to be centrally focused on Rudy’s condition, to capture every moment as best we could and to take the time to process what was happening on the blog…luxuries, really, because all helped me to stop and cherish what’s important. Well, I’m settling back into my home that I enjoy with my family that I love and deeply grateful for the 10 days we’ve had Rudy home with us. In the midst of all the adjustments of having Rudy home and accepting my new role at home, I feel the challenge for me will now be to apply the lessons I learned in recent months to our family’s life from this point forward…that as the demands of “normal” life start to creep back into my focus, my commitment to take life one day at a time, not sweat the small stuff and truly cherish my husband and ALL my kids remains in the forefront of my mind and heart. I know it sounds cliche but whether we are faced with a life-threatening condition or not, our days are numbered and I want to respond to life not as if I’m entitled to tomorrow but, instead, as if tomorrow is “icing on the cake” no matter what it holds. Unfortunately, this is so much easier to articulate than it is to practice…how quickly my good intentions fly out the window when a phone call with a not-so-helpful customer service rep from a medical supply company makes my blood boil OR when I begin to resent my responsibilities in the home out of sheer exhaustion…a worthy challenge, indeed!

On the Rudy-front, we have had a good week. As I mentioned, we’ve been to a few doctor appointments and a few pharmacies. We’re in the process of weaning him off methadone (withdrawal treatment), prednisone (steroid) and diuril (diaretic) but we’ve added two heart medications as ordered by the local peds cardiologist. The daily schedule of meds, diaper changes, trach and g-tube care, periodic suctioning, time on the mister, feeds, etc still makes for a full day but it is easier today than it was last week which makes it safe to assume it will be even easier next week. He still isn’t smiling but his brow isn’t furrowed continually so I think he is lightening up. I haven’t ventured outside home much except to go to doctor appointments but even that feels less intimidating. Rudy had his first fitful night last night since being home which left me and Rolf a little foggy-headed today and he remained pretty uncomfortable for most of the day so we’ll keep a close eye on him…not sure whether it’s withdrawal symptoms from the methadone wean OR teething (two teeth have now cut through!) so we watch and wait. He is a bit backwards…mad and fitful until we got to the diagnostic lab today and then he fell asleep while they stuck him with a needle for the blood draw!! Funny boy…

FYI: Stay tuned for upcoming details of Rudy’s Debut Party we hope to have in mid-May…an opportunity to have his baby dedication as well as thank all of you who have supported our family during this time and helped pray Rudy home!!!! Family, Friends, Faith – many reasons to celebrate! We sure hope you can join us…

april-16-001

Slumber Party

‘Working on a longer update that I’ll post tomorrow but I couldn’t let this precious scene pass by without documentation…Rudy experienced the view from Olivia’s top bunk this evening. We’re not quite sure what HE thought of the whole thing but big sis Olivia was thrilled. Our adjustment continues but we are blessed in the process…Thank you for your prayers!

sumber-party-003

A good kind of tired

It’s hard to believe that tomorrow marks the one-week anniversary of Rudy’s homecoming. The week has flown by and we’re adjusting to life with Rudy at home. Trish mentioned the simple joy of both being at home together without any feeling of being torn. Some habits die hard–after 27 weeks in the ICU I had to catch myself tonight as I picked up the phone for an evening call down to UCLA for an evening check-in with the nurse.

Rudy’s routine takes some learning and time, with periodic meds and treatments throughout the day that start at 6am and end at midnight. So it cuts into sleep, but what newborn wouldn’t? Of course his condition tends to keep us on our toes and has it’s humorous moments. This morning he seemed more agitated than usual and none of the usual fixes (diaper change, suction, food) seemed to do the trick. Understandably, thoughts of cardiac complications are quick to fill one’s mind but in watching him chomp furiously a closer examination revealed a tooth poking through. Considering everything else he’s facing, we tend to forget the standard baby stuff–this might also explain the fever episode on Friday.

We had an appointment with our Pediatric Cardiologist here in SB today which stretched over 2 hours. It was a bit surreal as our journey with HLHS started there the day after our troubling ultrasound in August. Hard to believe all that’s transpired since then. We were very pleased with his thoroughness in having been in contact with the team at UCLA and then doing his own Echo and EKG to get a baseline on Rudy’s function. It is very important for him to be working together with our pediatrician so they will be in contact on the different medications he needs. This seemed to be more seamless at UCLA where all the doctors worked on the same floor, but the doctors understand the acuteness of Rudy’s condition and express that it’s important for them to maintain good contact. Much of what they have to assess is the medications he’s on that stem from the various traumas he’s had (thyroid, chylo, kidneys, stomach and, oh yeah, heart surgery). The process needs to be careful and measured without too many changes at once to not upset Rudy’s balance. I continue to be in awe at what Rudy has overcome, but today also made me aware of the fragility of his condition. He still needs two major heart surgeries whose outcomes can be greatly impacted by minute variances in pressure within certain veins or the function of relatively small valves–all things far beyond our control. The walk of faith continues as all of this is in hands much greater than ours.

Rudy may not be in the ICU but it seems that sophisticated medical machinery seems to follow him around, as this photo from today’s appointment bears witness. Not your typical well child visit….